4 Misconceptions About Lyme Disease

The patch of poison ivy on my face itched like crazy as I led a gaggle of third-graders to the pool for swimming lessons. Poison ivy was virtually an occupational hazard, seeing as the three-leaved plants were abundant in the shallow woods where I regularly took my campers hiking. So when a red, spotted rash appeared on my hip a few days later, I figured it was just more poison ivy to cover in calamine lotion and resist scratching. But as the week went on, the spotted rash spread to my stomach and across my other hip.

With a growing portion of my torso covered in splotches, it seemed like time to see a doctor. At an urgent care clinic near the summer camp, a doctor prescribed a cream for some sort of fungus she said I picked up in the woods. She was partially right: My rash did come from the woods, but it wasn’t fungal. I had Lyme disease, courtesy of a tiny vampire tick that had latched onto my hip and bitten me without my knowing it.

I only ended up with the correct diagnosis because my mom tagged along at my appointment. Her own case of Lyme had gone undiagnosed for months, partially because her own oddly shaped rash looked nothing like the textbook “bullseye” Lyme rash. She insisted the doctor test my blood. Call it mother’s intuition. Or just pure luck. Regardless, her hunch was spot on.

“There is nothing else in the world that causes that rash; nothing else in the entire universe except the Lyme bacteria.”

That’s not always how things go after people contract Lyme. While about 30,000 cases of Lyme disease are reported annually, the actual number of people infected each year is projected to be around 300,000, according to the Centers for Disease Control and Prevention. In other words, the vast majority of Lyme remains undiagnosed.

Infections are also on the rise across the country. The prevalence of tick-borne illness more than doubled between 2004 and 2016 — from 22,000 to 48,000 cases, per the CDC. Lyme disease accounted for 82 percent of those cases. As Dr. Erica Lehman, a tick-borne disease medical specialist in Beverly Hills, California, puts it: “Lyme disease is the fastest growing epidemic in the world.”

Experts say insufficient knowledge about the disease is a factor in its stealthy spread. To effectively manage Lyme, it’s important to get the facts straight. Here are four common misconceptions about this tick-borne bacterial illness.

Misconception: If you contract Lyme, you’ll develop a bullseye rash.The truth: There’s no guarantee of that particular rash showing up. And without the bullseye, other Lyme symptoms can be hard to piece together.

The CDC describes the classic bullseye rash as a “circular red rash with a central clearing that slowly expands.” Many people (doctors included) learn to recognize it as the signature mark of Lyme.

“There is nothing else in the world that causes that rash,” Lehman said; “nothing else in the entire universe except the Lyme bacteria. If you do get the [bullseye] rash, you have it. You have been infected.”

Lyme-related rashes (bullseye or not) are also temporary, lasting only a few days, and often show up in hard-to-see places. For me, the rash on my stomach was impossible to miss. But ticks tend to seek out moist, warm parts of the body, like the space behind the ear, the bend of the knee, the groin and the hairline. Someone could easily develop a rash they never notice. And if they don’t know they had a rash in the first place, they won’t report it to a doctor, potentially interfering with a timely, accurate diagnosis.

Aside from the bullseye rash, early Lyme symptoms are also symptoms of many other ailments. For instance, I assumed my knees were achy from playing with kids all day, and that my lymph nodes were swollen because I’d been battling a sore throat. Then there was the abnormal, unyielding exhaustion. It was a level of tiredness I’d never felt before and which no number of naps or extra-long nights of sleep could get rid of. They were all Lyme-related.

Other early Lyme symptoms include fever, chills and headaches. However, over time, someone infected with Lyme can develop a number of more serious symptoms, including facial palsy, inflammation of the brain and spinal cord, and short-term memory loss.

Even when someone who’s exhibiting multiple Lyme symptoms sees a doctor for help, a correct diagnosis can be hard to come by. Not all primary care physicians are knowledgeable about the disease. On top of that, the blood tests used to diagnose Lyme aren’t perfect.

The CDC recommends a two-tiered Lyme testing process that measures your antibody response to the infection but not the infection itself.“That means we have to rely on your body to recognize the infection and develop the antibodies,” said Daniel Cameron, a Lyme disease expert in Mount Kisco, New York.

“A tick is nature’s dirty needle.”

The first step is a screening test, the enzyme-linked immunosorbent assay (ELISA), which is supposed to be highly sensitive to Lyme antibodies. If ELISA comes back negative, no further testing is recommended. If the result is positive (or even inconclusive), a Western Blot test (of which there are two types) is performed to confirm a Lyme diagnosis.

But the two-tiered system isn’t a sure bet. By some estimates, it misses almost half of Lyme infections. False negative results are particularly likely during the first four to six weeks after Lyme is contracted, as some people are slower to mount an antibody response that’s strong enough to register on a blood test.

Misconception: One round of antibiotics always clears up a Lyme infection.The truth: Antibiotics are the recommended first-line treatment for Lyme, but fully treating the disease can be a complicated process.

The National Institute of Allergy and Infectious Diseases says Lyme disease should clear up after a single course of an antibiotic such as doxycycline or amoxicillin. While a few weeks of meds did the trick for me, about 10 percent of Lyme patients continue to experience symptoms after taking antibiotics, an issue called post-Lyme disease syndrome. Symptoms of PLDS includefatigue, difficulty sleeping, arthralgia (pain where two or more bones meet), myalgia (muscle soreness and aching), memory impairment and headaches.

If a patient still exhibits symptoms after taking antibiotics, a handful of other factors might be at play, including possible coinfections or simply not taking a long enough course of antibiotics.

“It’s a very complex disease,” said Dorothy Leland, vice president and director of communications for LymeDisease.org, a national patient advocacy organization. “The biggest misconception is that two to four weeks of antibiotics will fix you,” she said. “There are some people that seems to work for, but there are a whole lot of people that it doesn’t.”

Misconception: People primarily get tick bites in wooded areas during the summer.The truth: You can pick up Lyme all year round, all over the country.

Tick bites should absolutely be top of mind when you’re forest-bathing in July. But even when you’re trapped in the city and shorts weather is a distant memory, you should still be aware of Lyme symptoms.

In recent years, Lyme disease has shown up in geographic areas previously considered relatively safe from tick-borne disease. As Quest Diagnostics reported last year, people are now testing positive for Lyme in all 50 states. The majority of cases do still occur in New England and the mid-Atlantic region, with Maine, Vermont and Pennsylvania topping the list of most-infected states. However, Lyme is now also common in Wisconsin, Minnesota, Oregon and other states in the Great Lakes and Pacific coastal regions.

“A tick,” said Lehman, “is nature’s dirty needle.”

Two species of ticks are known to carry Lyme, and you don’t need to wade into the woods to come into contact with either kind. The blacklegged tick, also commonly known as the deer tick, is mainly found in the eastern half of the country; while the western blacklegged tick is native to the West Coast.

These stealthy arachnids can also survive in freezing temperatures. Come winter, ticks hide in leaves or brush. Snowfall provides insulation, enabling dormant ticks to live through the season. Additionally, ticks can latch onto animal hosts, such as mice, moose, deer and domestic pets,which helps them both get through the winter and travel far and wide distances.

If you think there’s a chance you have a tick bite, don’t hold out for the bullseye. Check in with a doctor as soon as possible and keep track of any and all symptoms.

Haley Velasco lives in New York, where she works as a digital publishing editor at The Wall Street Journal. She's also written for the New York Times, USA Today, Life & Style and more.

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Just got my second Lyme tick bite. This time I saw the bulls eye rash immediately. No doubt about it …Lyme disease. Hopefully the three weeks of doxycycline will kill the bacteria as I was quickly diagnosed. Last time I had a rash but it was not bulls eye. Also had one swollen knee. A classic symptom of Lyme ad it spreads into the synovial fluid. Luckily my doctor sent off the fluid from my knee and saw the bacteria. After many weeks of doxycycline not any better, I had a pic line installed and did 34 days of liquid antibiotics. Then I had a classic post Lyme problem… rheumatoid arthritis. Went to a another specialist and did about a year of methotrexate. All the swelling around my joints went away. So this time I immediately got the doxycycline. I’m not taking any chances 😝

Thanks for sharing, Donna, and hope the doxycycline works for you. I’m being tested for Lymes and waiting for blood test results. I’m hoping the result won’t be Lymes though as I was bitten at the beginning of June (by something) and have been watching the rash spread right across my stomach in the shape more resembling the outline of a rugby ball with the bite being in the centre. The bite was incredibly painful after initial itchiness and at times had to hold my clothing away from it as it hurt so much. The chemist prescribed hydrocortisone cream which I’ve been using twice daily and has lessened the colour of the rash but it still has a brighter edge to it. This has coincided with being seen at the hospital for a possible rheumatoid arthritis/lupus diagnosis for which I have been on Hydroxychloriquine twice daily. Yesterday I was told to stop the meds for more blood tests.

Good afternoon. I found a tick on me about 16 hours after being in the forest. I tweezed it off but found a bulls eye rash on me the following day which was two days from the forest visit. I started doxycycline later that day.

What else do I need to do to ensure I don’t have a challenging and long journey ahead of me? What else should I take or do?

Do you think catching it soon enough within two days is enough to wipe out the infection without issues?

We just had a warm 72 degree day 1/12 (Sunday) here in MA. I found 2 ticks on me Tuesday night! I’m on Doxy for prevention as one of my tick tested for Lyme, Borrelia miyamotoi, and Anaplasma phagocytophilum ugh! Lost the second one somehow. I had no idea they come out in the winter!

I have a reacuring bullseye rash for several years .i have almost all of the symptoms and getting worse without getting any Drs to explain the rash .the muscle pain .memory problems and on and on …i live undiagnosed and in chronic pain .the rash just came back out again after several yrs of not seeing it .givin some steroid it cleared but is trying to reburst.how do I get heard .i feel as though I am stuck sitting suffering and ignored.can all this hell all this time I’ve been in be Lyme? What else causescall the same symptoms .How do I get a Dr to listen ? Desperately seeking help

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For people with irritable bowel syndrome, it’s common to hear that symptoms such as cramping, alternating diarrhea and constipation, and bloating are “all in their head.” In the case of IBS, there’s actually some truth to this.

It’s not that their symptoms don’t exist. IBS is a very real disorder, and managing its physical toll often becomes an all-consuming effort. The litany of concerns that accompany so many activities — always scouting the closest bathroom, making sure you can reach it in time, farting in public — keeps many people with IBS from having a social life.

Yet according to some experts, IBS is not solely about what’s going on in the digestive system; rather, the brain exacerbates the condition. “IBS is a disorder of brain-gut dysregulation,” explains GI psychologist Sarah Kinsinger, who is also co-chair of the psychogastroenterology section of the Rome Foundation. Accordingly, addressing the “brain” side of IBS through cognitive behavioral therapy with a trained psychologist may help decrease both the anxiety that’s often associated with the disorder and its physical symptoms.

“CBT really should be the first-line treatment for people with IBS. It’s the treatment with by far the most empirical support, and when done well, it can be curative,” says Melissa Hunt, associate director of clinical training in the psychology department at the University of Pennsylvania.

In a series of trialspublished last year, researchers in the UK compared the standard treatment for IBS (typically diet and lifestyle modifications and/or medication) with eight sessions of CBT delivered over the phone or online. Before and after the trials, participants answered questionnaires designed to measure their anxiety, depression and ability to cope with their illness. Two years after the trials, 71 percent of the phone-CBT group and 63 percent of the online-CBT group reported clinically significant changes in their IBS symptoms. Meanwhile, less than half of the standard-treatment group reported such an improvement. Those who did CBT also exhibited lower levels of anxiety and depression and higher coping ability than other participants.

In an earlier meta-analysis (a study of studies), published in 2018 in the Journal of Gastrointestinal and Liver Diseases, a different team of researchers also found that CBT appeared to reduce both psychosocial distress and the severity of IBS symptoms, with a greater effect on the physical symptoms than on the mental ones.

Explainers

The brain-gut connection

How this happens is not completely clear at this point, but it’s believed to have something to do with how the gut and brain communicate.

“IBS is thought to be a disorder of centralized pain processing,” Hunt explains. “There is miscommunication between the pain centers in the brain and the nerves in the gut. In people with IBS, pain signaling gets inappropriately amplified.” Discomfort that wouldn’t even register in the majority of people feels like being stabbed in the gut to a person with IBS. “The best way to address that is to find ways to help reduce pain signaling, and that’s with a psychologist,” Hunt says.

CBT for IBS entails learning relaxation techniques, such as diaphragmatic breathing and progressive muscle relaxation, which help reduce the “volume” of the pain signals by activating the parasympathetic nervous system, i.e., the body’s “rest and digest” response. “This can also lead to increased blood flow and oxygen to the digestive system, which helps the GI tract to function in a more rhythmic way,” says Kinsinger, who is also an associate professor at Chicago’s Loyola University Medical Center.

CBT also involves thought restructuring. IBS can cause a cycle of worry: Worrying about symptoms leads to being hyperfocused on the slightest hint of any symptom, which increases anxiety, which aggravates symptoms. People with IBS also often catastrophize, meaning they assume the worst will happen (“If I have an accident at work, I’ll get fired and never get another job”), develop social anxiety and become withdrawn. CBT addresses these issues by shifting attention away from IBS symptoms and using exposure therapy to help people gradually engage in more activities outside their homes.

Additionally, using CBT, people with IBS learn to identify and change dysfunctional ways of thinking. For example, consider someone with school-aged children who asks their spouse to attend all school functions because they’re afraid of farting in a room with other parents, which would inevitably cause humiliation and might even make people think they’re disgusting A therapist might ask them how often they notice bodily noises from other people to help them realize that we’re a lot more cognizant of our own bodily functions than other people are. “In other words, we identify the catastrophic beliefs and then search for evidence supporting them or not,” Hunt says.

CBT is a skills-based, goal-oriented approach to treating mental disorders that emerged in the mid-20th century. All CBT programs share the same underlying goal of helping patients identify and modify negative or unhelpful thought patterns and behaviors. “It teaches patients techniques that they can then implement on their own.” says Kinsinger. “It can be done pretty efficiently, depending how motivated and receptive one is to learning these skills.” But over time, customized versions of CBT have been developed for specific conditions including insomnia, schizophrenia and IBS. Different versions of CBT use different techniques, such as role-playing, exposure therapy and relaxation exercises, and vary in length. On average, CBT for IBS lasts between 4 and 10 sessions in total.

Jeffrey Lackner, professor and chief of the division of behavioral medicine at the University at Buffalo, SUNY, says their program is structured like a course: “You learn a specific skill to manage your GI symptoms, process information differently or respond to stress in a less extreme way. Then you practice that skill in session before using it in the real world.” Often therapists also give patients homework to fine-tune the skills they learn. They come out of CBT with a toolbox of techniques to manage the day-to-day burden of IBS.

Some people with IBS do CBT on their own, using self-help books, online materials or apps without ever seeing a therapist. “Not many psychologists are trained to treat GI disorders specifically, so physicians don’t often have anyone to refer patients to,” Kinsinger says. The Rome Foundation trains psychologists and maintains a directory of gastrointestinal psychologists, but if someone can’t find a provider in their area, Hunt and Kinsinger recommend looking for a psychologist who’s trained in CBT and has experience treating chronic pain, panic disorders or anxiety.

Reducing sensations vs. reducing sensitivity

Not everyone is fully on board with CBT for IBS. One 2018 review study found “insufficient evidence to demonstrate the effectiveness of online CBT to manage mental and physical outcomes in gastrointestinal diseases” including IBS. A different 2018 review concluded that although psychological treatments for IBS appear to help in clinical trials, it’s unclear if they work in other settings and which treatments — such as CBT, mindfulness-based stress reduction and guided affective imagery — are most effective.

IBS is a complex problem, and some doctors prefer to integrate CBT with other treatments. But “by the time we see them,” Lackner says, “many of our patients have found that the medical treatments have not provided adequate symptom relief.”

Some IBS patients also find thetraditional approaches too hard to stick with. The most commonly prescribed treatment is a “low-FODMAP” diet, which requires giving up all dairy and legumes, plus many grains, fruits and vegetables. “Some trials show that even if the diet reduces or eliminates GI symptoms, it doesn’t improve quality of life because it’s crazy restrictive,” Lackner points out.

“With IBS, the nerve endings in the gut have become hypersensitized, and the brain magnifies those signals in the gut,” Hunt says. “The low-FODMAP diet tries to reduce the sensations, whereas CBT reduces the hypersensitivity. When you turn down the volume on the sensations, then you can eat whatever you want.”

Whether CBT helps with this brain-gut dysregulation, addresses distorted thinking and anxiety, or increases confidence in a person’s ability to manage gastrointestinal symptoms — or all of the above — it’s helped people with IBS resume parts of their life they’d put on hold.

Brittany Risher is a writer, editor and digital strategist specializing in health and lifestyle content. She's written for publications including Men's Health, Women's Health, Self and Yoga Journal.

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